We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people ā enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.Ā
Our services
Telephone Support
Our telephone support line is open 11am - 2pm, Monday to Friday
Email Support
You can reach us via email at any time, and we aim to respond as quickly as possible
Events & Annual Forum
We organise multiple events around the country
CaverBuddies
On going peer support when you need it most
Professional Lectures
Presentation and research events around the country
Meet Ups
Join us, and members from your local area for a coffee & chat
Therapy
Therapy for adults, children and carers to work though concerns
Webinars
Online meetings, presentations & chats providing information & advice
Carers Support
Support, chat and advice for carers of those with cavernoma
What our members say...
A world without CAUK doesnāt bear thinking about!
Get in touch with us
Ollie Holt Bouceathon
What does a 10 year old choose to do to raise funds for a charity close to the heart of himself and his family? He
Coronavirus and Cavernoma
As the situation with Coronavirus (Covid-19) develops, we all need to be thinking of ways to keep ourselves and our families safe. The situation, and
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
Brain Surgery during COVID-19 Lockdown (Update)
Judith Nelson shares an update on her brain surgery recovery process.
The Two-Hit Mechanism of Gene Mutation (Part 2)
What happens to enable cavernoma formation in people with both familial and sporadic cavernoma.
An Introduction to Cavernoma Genetics (Part 1)
What is the critical difference between a normal blood capillary and one with a cavernoma. Providing some background to genes and genetics, and explains what the cavernoma genes do (or donāt do)
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for